Little girl a big inspiration to local aunt, uncle

Lauren Williams Staff Writer

September 30, 2013

When Kristin and Trey Cummings, owners of Ribeye’s of Clinton and Happy Belly Deli, learned that their newborn niece Lilly Rae was diagnosed with achondraplasia, a growth disorder that leads to dwarfism, they knew they wanted to do something not only to support her but also to help others better understand her condition.

Knowing that the Little People of America organization recognizes October as national dwarfism awareness month, the Cummings are planning to hold a local dwarfism awareness event at both Ribeye’s and Happy Belly Deli on Friday, Oct. 25, the day designated as dwarfism awareness day.

“We’re going to have specials at each restaurant that day,” shared Kristin. “We decided to do a little play on words so here (at Ribeye’s) we’re going to have our petite steak for $14 and at the deli we’re going to have mini meals for $5.”

As customers enjoy these specials, they will also have to opportunity to learn more about achondraplasia. “I’m going to have some photos of her (Lilly) around. I wish she could be here but I don’t think that’s going to be possible. We’re also going to have information on the tables, just bullet points about the disorder. Any little bit of facts that we can get out here and there will help.”

Additionally, Kristin hopes to have coloring sheets — ones that help kids understand the everybody is different — for children who come into the restaurants that Friday.

“We want to raise awareness about dwarfism and really any difference that people have, especially for children,” Kristin pointed out. “It’s important to teach children to be respectful of other people’s differences.”

One of the main things that Kristin wants to share about Lilly and others diagnosed with achondraplasia is that “she’s completely normal.”

“She’s happy all the time. You can tell when she looks at you that she just loves you. She’s just a happy kid,” described Kristin of her niece, adding that although Lilly is just seven-months-old and still developing her own unique personality, “she is already all personality.”

“Cognitively, she is no different from any other child. She just has growth issues,” Kristin stressed.

Lilly’s family found out about her growth issues only after she came into the world.

“They (Lilly’s parents) had no idea before she was born,” said Kristin. “They found out as soon as she was born. The doctor thought something was suspicious so they did an x-ray test and a blood test which confirmed it.”

Once doctors diagnosed Lilly, they also performed a genetics test to determine the source of the disorder, added Kristin. “There’s no family history of it on either side. It’s just a mutation…There’s nothing they could’ve done different to prevent it.”

Because of the disorder and the fact that she is a growing baby, Lilly suffers from a variety of complications. At 10 weeks old she had to undergo spinal decompression surgery which helped correct one of her breathing problems — central apnea, a neorological condition that hinders the brain as it tries to tell the body to breathe.

Kristin shared that she had just given birth to her second child when Lilly had to go through the surgery and wasn’t able to be with her family during what she recalled as a “very scary” time, adding that the surgery may to be performed more times during Lilly’s life.

Also because of her achondraplasia, Lilly also struggles with kyphosis, a bowing of the spine that requires Lilly’s back to be kept straight as much as possible, including when eating and bathing.

“She has to have multiple skeletal scans. She’s had three MRIs already,” Kristin noted. “She sees multiple doctors. They’re always constantly having to check on something.”

However, the family, which resides in Holly Springs, is taking these challenges in stride, shared Kristin, praising her “pro-active” brother and sister-in-law for their dedication to their child’s well-being, explaining that they already have Lilly in physical therapy, are getting her the very best medical attention, and are already participating in the Little People of America organization and various support groups.

Their proactive response to Lilly’s disorder has influenced the Cummings who wish to do what they can to support their niece as well as raise much-needed awareness about achondraplasia.

That support and awareness started in their own home. “I’ve talked to my child about it,” said Cummings in reference to her five-year-old son, explaining that when he sees dwarfs on TV she makes sure to use those instances as educational moments. “I say, ‘You see how their arms and legs are shorter? Well that’s how Lilly is going to be. Isn’t that cool?’ I tell him that God chose her, that she gets to be blessed like that…The more positive exposure that children get to differences like that, the more accepting they will be about it.”

Out of moments like that with her own child came a desire to hold a local community awareness day.

“We knew we need to hold some type of awareness event,” Kristin said, “because you don’t hear a lot about it (dwarfism), especially around here.”

And the Cummings hope that their event will have a positive effect on both children and adults.

“If you teach the adults, then hopefully they’ll teach their children,” said Kristin, explaining that kids have to be taught that calling someone by a derogatory name, like midget, is not acceptable or respectful. “I think it (bullying people because of their differences) has gotten better in some ways, but it still needs to be addressed. They need to know that everybody is different.”

“I hope everybody can come out (on the awareness day), but if they can’t and would still like some information, I’m more than happy to get it to them. I’ll also go to any school that is interested in learning about it,” said Kristin. “I just want to do as much as I can to be involved because if people know what this (achondraplasia) is, they’re less likely to make fun, more likely to be accepting.”

Lauren Williams can be reached at 910-592-8137, ext. 117 or via email at lwilliams@civitasmedia.com.